The following stories have been shared by those living with endometriosis, for the benefit of everyone in the endometriosis community. You can read all of these personal stories online here (each story has its own page) or save the print-ready .pdf format. You will need Acrobat Reader 5.0 or better to be able to read them. Feel free to print copies for your personal use, and please respect copyright; kindly seek permission before publishing elsewhere.Personal stories sharing experiences and practical hints can be of immense help to others. Please consider sharing your own valuable endometriosis experiences. You may choose to share just one brief aspect (eg Mirena IUD) and your story can be anonymous. If you are interested in writing your own story, please Contact us.

Anonymous Teen (Hamilton, February 2009)

I first discovered the word endometriosis when I was fourteen. I had been experiencing extremely heavy and painful periods for two years. My periods were so heavy that I could soak through a ‘super’ pad in half an hour! The pain was like
nothing I had ever experienced before – not just cramping - it was a gripping,
twisting pain that radiated from my stomach to my legs. I experienced bad cramping and aches through
my back throughout the month. I had many
visits to our GP who prescribed Ponstan and anti-inflammatories, which didn’t
help much.
I
first visited a gynaecologist when I was fourteen, who helpfully suggested that
becoming pregnant might help my period problems! This was not something I wanted to consider
at that age. I was instead put on the
contraceptive pill to attempt to control the excessive bleeding every
month. By this time, I was having a lot
of time off school as the heavy bleeding and pain lasted for over a week each
month. Although I attended a girl’s
school, I found it very difficult to explain to anyone why I was so
unwell. Everyone else seemed to cope
with their periods much better than I was, and it was something I felt
embarrassed to talk about. I had a D&C
when I was 14, which did not produce any diagnosis or any relief from heavy
periods.
It
was a very lonely time for me. I visited
the library and searched on the internet, hoping for some guidance or help with
my problem. It was then that I found the
term endometriosis, and a checklist of possible symptoms – I had nearly every
one of them!
I
was excited to find some kind of explanation for the problems I had been
experiencing. I visited a new
gynaecologist who dismissed the idea of possibly having endometriosis – I was
far too young! I was told that this only
affected women older than me – I was only a teenager! I felt extremely confused, as I found it hard
to convey to the doctors I saw exactly how bad my periods were. By this stage, I was becoming extremely
anemic from my heavy menstrual bleeding.
I felt sapped of energy and people frequently commented on my very pale
skin. I chose not to take iron
supplements as I didn’t like their side effects. I struggle to remember events that happened
at this time as I was so anemic, it was all I could manage to attend school as
much as possible then come home and rest.
I had few other interests as I just didn’t have the energy, and I was
embarrassed of my heavy bleeding and flooding.
I remember attending a concert during the first day of my period and
when I stood up at the end, I had completely flooded – blood through my jeans
and all over the seat. I was embarrassed
and mortified, and it wasn’t the only time it happened! It was especially hard to cope with this at
school. One particularly understanding
and helpful teacher told me about her daughter who had similar problems, and
gave me an advertisement for the endometriosis support group based in Hamilton.
My
mother and I attended a support group meeting.
I found it amazing and a relief to talk to other women experiencing the
same thing as me. I could talk about
what was happening and how I felt, and these other women understood. I found out more about possible treatments
and side effects of medication. In the
summer holidays before my 6th form year, I had laparoscopic surgery that
diagnosed endometriosis. I was relieved
to finally have this diagnosis confirmed.
The operation did not go smoothly.
The night after the operation, I was in a lot of pain and requested pain
relief from the hospital nurses. They
gave me Panadol, which I took, but it was not sufficient. Despite other pain relief being charted, they
declined to give me any. I was not able
to sleep that night and could only breathe with considerable pain. I later developed an infection in the surgery
incision in my navel. I could also pull
nylon stitches through the other incision sites for months afterwards, and this
seems to have left keloid type scars.
Unfortunately,
despite the diagnosis, I did not experience any relief from the pain or heavy
periods after the laparoscopy. The
gynaecologist prescribed medication - gonadotropin-releasing hormone (GnRH
agonists) - to treat any remaining areas of endometriosis, but I was alarmed by
the possible side effects – hair growth, voice lowering and acne. I chose to not take this medication and
returned to taking the contraceptive pill continuously (skipping sugar pills)
in an effort to reduce the amount of periods I was having. I was still very anemic and experienced
breakthrough bleeding when taking the Pill continuously. I kept attending the support group meeting as
I found the speakers and discussions with other women extremely helpful. I was relieved to know I was not the only one
experiencing these problems.
I
found it very difficult to attend school during this time, as I was frequently
taking codeine pills or Tramadol to reduce the pain I was experiencing. These left me feeling ‘fuzzy’ and made it
very hard to concentrate. I sometimes
wonder how I sat some of my exams while on this medication! I managed to finish high school in 2002,
having passed my Bursary exams. I did
not plan any future study at this time, as I did not think I could leave home
or complete tertiary study with my current state of health. I found full-time work in retail and had
another laparoscopy operation in mid 2003.
This was with Dr Hillary Liddell in Ascot Hospital, Auckland. I had read about Dr Liddell in a ‘Next’
magazine article, in which she mentioned treating many teenage girls with
endometriosis. I found her to be an
extremely warm, engaging doctor. She did
not dismiss my concerns or fears – she actually took me seriously! I had a laparoscopy for removal of
endometriosis, and an insertion of a Mirena ICUD device.
I
joke that I walked out of the hospital the day after having the laparoscopy
feeling better than when I walked in – and I’m not really joking! Despite the discomfort of the surgery, I felt
better almost immediately after the operation.
Dr Liddell said that she had removed moderate deposits of endometriosis,
as well as adhesions to the bowel and cul-de-sac. I had some bleeding for a couple of weeks,
but recovered better than from the previous laparoscopy. I returned to work a week and a half
later. Three weeks after the operation,
I started bleeding which turned into extremely heavy flooding, and passing huge
clots. I hurriedly left work as this
began when I was standing on the shop floor.
I was quite alarmed by the amount of blood and clots that I was
losing. This continued for most of that
day, but has never occurred again. I
initially had monthly spotting, then spotting for a day every few months. Now I have spotting very infrequently, and it
is very light. I have no menstrual-related
pain whatsoever and my backaches are gone (these may be explained by the
discovery that I have a retroverted uterus – sloping backwards instead of
forwards). I am very pleased I chose to
have the Mirena. It has proved its worth
as contraception and period control, although I probably would not have chosen
to use it as a contraceptive device if I was not requiring it for period
control due to the endometriosis.
Since
the second laparoscopy and Mirena insertion, I am no longer anemic and continually
tired. I do not have to plan my life around my ‘period week’ each month. I don’t have to sleep on towels in case I
flood! I have realised that having a
bowel motion no longer causes any pain.
I graduated with a Bachelor of
Nursing in 2007 and am now pursuing my career as a paediatric nurse at
Starship Hospital. I have no doubt that
I would not have been able to work or study at a tertiary level without the
treatment and removal of my endometriosis.
At present, I am totally healthy and happy, and I urge other girls and
women seek to help and knowledge around endometriosis and period-related
issues. End.